Saturday, we had a little bit of a scare. My mom was visiting and was helping Ryan look for something he lost in his bed. I heard her say, “Ryan, what did you spill in your bed?” I looked over and saw a bright red puddle on his sheets and realized “That’s blood!” However, I couldn’t see where it was coming from. It was all over the outside of his IV lines. He generally has six lines hooked up at a time with all sorts of connections, so it took a little while to figure out where it was coming from. I noticed one of the lines had blood inside of it and he wasn’t getting a blood transfusion. He should have only had stuff going into his body, not coming out.
When the nurse arrived to help, one of the line connections snapped off entirely in her hand. Apparently it had been cracked for who knows how long and finally gave way. With the loss of pressure in the line from his IV pump, and not having the line clamped in the “off” position, the Hickman Line catheter was draining blood directly from the major artery that it is threaded through.
It seems that this was just a freak accident, but I kept thinking about the fact that, if this had happened at night, he could have bled out for hours without us knowing. Scary!
Leading up to transplant, I asked Ryan on several different occasions if he wanted to do something crazy with his hair before he lost it, like get a colored Mohawk or shave it all off. He said “No, I want to shed it like a cat.” (He gets silly sometimes and likes to pretend he is a cat.)
I had expected some hair loss to start around Day +5; however, there were no signs of it. I started wondering if he would be the rare case of someone with hair that didn’t fall out with chemo. Around Day +6, I asked the Physician’s Assistant on the team “Is it strange that he doesn’t have any hair falling out yet?” She looked at me with a smile and simply said “Day +9”. Well, Day +9 rolled around on Sunday and when the team did rounds in the AM, there were still no signs of hair loss. I started to worry that maybe the chemo hadn’t done everything it was supposed to do. However, about 5 minutes after the team left the room, I noticed a few strands of hair on Ryan’s pillow. I ran my fingers through his hair and small strands of hair were left between my fingers.
Once again, I asked Ryan if he just wanted to shave it all off and he said “No, I don’t want to be bald.” I said “Well, you know you are going to be bald, but it will grow back.” He then said that he didn’t want any visitors after he went bald because he didn’t want people to see him. I was surprised that it all of the sudden it seemed to be that big of a deal to him, because when we talked about it before, he seemed fairly okay with it.
Maybe he associates being bald, with being a baby. I am not sure, but later in the day, we talked about how there are men that shave their head on purpose because they like the way it looks and that there are even athletes and celebrities that are bald. I found some pictures online of Vin Diesel and Michael Jordan to show him, but I am not sure if it helped.
By this afternoon, Ryan was complaining that hair kept falling in his face and itching. I could pull fairly large clumps of hair from his head. I suggested that we at least cut it shorter with some scissors and he agreed to that.
I wanted him to feel like he had some level of control over the situation, so I let him cut what he wanted to with the scissors and then I cut the rest as short as I could. I told him that this would probably be the worst haircut he ever gets and that he shouldn’t tip me.
Part way through the haircut he checked himself out in the mirror and said “Hey, I look pretty good bald.” I am hoping tomorrow he will realize it will feel a lot better if he just shaves the rest off.